Today was Ben's check up for Keto.  Megan went tto the sibling playroom and made some are projects and Nate babysat for me in the room. It all went pretty well. We did discover that Ben has lost weight on the diet-rather a surprise to the nutritionist.  She raised the amount of caloreis he gets per snack(Huzzah! I am so glad I hadn't already made all of his snacks for camping!) The nutritionist thinks we will have to raise the calories again because Ben is less active than normal right now as his body adjusts. Once he returns to his normal activity level, he'll burn more calories.  She also suggested the one seizure he had was probably due to the bite of frosting he got. Pretty much cheating=seizures on Keto.  Ben is super sleepy again today, and his Ketones were at 80 this morning. Lower morning Ketones is common, and nothing to be concerned about.   We entered a few new meals and snacks, and if I can get the hang of measuring the food in volume, we will be on our way with this thing.

I have been having to keep Ben inside, or at least in the front yard to keep him out of the cherries. No matter how diligent I am, he always manages to find one. It is so very important to give Keto the very best shot we possibly can..Please pray the cherries all fall off the trees while we are camping!

I got all of Ben's snacks ready for camping today. I am so excited-he gets to have popcorn!  This is an old love of his, but something he has not eaten in three years. So it's the camping snack because it is easily portable. Like both SCD and Atkins, most of the food is "fresh" and not easily portable. This has been my greatest frustration in terms of special diets-We are really a family on the go. Plus, in order to get every drop of oil in him, we have had to go back to feeding Ben. grrrr. One step forward, two steps back, as always. However, it sounds like I am complaining, and I don't mean to. After all, one three second seizure in two weeks is God's own mercy-we will never forget who has brought us this far.

Teena

We did see a dip again this morning, only down to about 60 this time, but still, a pretty significant dip. My friend Patti says this can mean he's getting too many calories. That would be a bummer.

We had quite the adventure this morning, the sort that only occurs when you have a Ben in the house.  I was sitting on the front patio drinking my morning coffee, and taking a much needed break.  Dave and all the kids were in the house on various assorted computers, and keeping an eye on Ben.  After a bit I could hear Ben talking, but it sounded really funny. I thought he was talking to me through the window, but every time I looked, I couldn't see him.  Suddenly I hear Dave yell "Teena, come here!" I jumped up and ran inside to find Dave hanging upside down in the crawl space inside the closet.  Ben had opened the door, pulled everythng off the closet floor, opened the crawl space, and climbed on down. He was happily playing under the house while I blissfully drank my coffee.  Dave pulled him out, and I stripped him and put him in the shower. Ben looked up at me and began to sing the Itsy Bitsy Spider. Trying to follow Ben's unique communication style (he hasn't sung that particular song in months) I asked him in sign language if he was playing spider under the house. Ben looked delighted that I understood and he said "yeah!"

Most of my day today has been rearranging my kitchen to accomodate our new lifestyle, and rummaging about the garage trying to find the camping equipment we haven't used in two years. Most of it has disappeared. Slowly I am getting ready...Tuesday and Wednesday  are taken up with doctors appointments, so I needed to get the bulk of the work done today.

Yesterday God spoke to my heart in church. Normally this is something to be elated about, and in one sense I am. However, His message to me was "Hold it all with an open hand".  Yikes...I'm tired of letting go. I think the winds of change must be getting ready to blow once again...Lord, help me be flexible.

teena

Ben's ketones were at 40 again this morning, but 180 tonight.  We kept him inside all day, to see if it's cherries in the yard. He had a great day, demonstrating a whole new set of play skills. We are so excited to see this, we can hardly contain ourselves. Ben in learning to PRETEND! Cross another one off the "things he will never do" list.  Unfortunately, I am pretty sure I saw a short seizure this eveing. When they are that short, it is really hard to be sure it was a seizure and not just an odd behavior(my other kids occasionally do things that look like seizures, but are not...you get paranoid after a while). So I am going to count it for the neuro.

Today we celebrated Dave again-it was his Fathers' day. We just had a lot of fun.  One of the wonderful gifts of having Ben more well is getting to spend more quality time with Nate and Megan. Dave and I have been here, but not really a part of their lives the last two years. It feels that way, anyway. Nate has turned into a teenager before our very eyes, and is no longer a little boy. We would mourn this more if we both didn't adore junior high age boys. Megan is still a little girl, a fact we plan to make the most of for as long as we can. We don't want to miss anymore, God willing. Today we spent our time enjoying one another, and being grateful to be together without an emergency on the horizon. What an incredible blessing, and what a day of rest. 

Teena

OH, I almost forgot. Ben slept the whole night on a mattress on the floor last night! It was the first time in nearly two years that Dave and I had the bed to ourselves. It was wonderful!

I wanted to leave a wonderful, happy, cheerful, all is right in our world message today in honor of David's birthday, but that is not to be. Ben's ketones had dropped from 80 yesterday to 40 this morning. This most likely means Ben ate some cherries in the backyard yesterday when nobody was looking. Then, we kept him out of the yard today, and he snuck some of David's frosting off his cake. I am at my wit's end, I am so frustrated. After all this time, Keto won't work if Ben won't do it.  We've examined every angle of the cherry issue, and pretty much Ben can't play outside until cherry season is over... and no one can leave food anywhere in the house at any time. I'm really feeling nervous about how this is going to play out when we go camping, as the people we are going with have three young children. Even one bite of ANY food can throw off Ketosis.  Ugh, did I mention I am frustrated? Of course, I knew this would be rough, and there is always a learning curve. This would have been much easier two weeks ago with no birthdays or camping trips to factor in. Please pray for my patience, and Ben's co-operation.

On a good note, I think Dave is having a really good birthday, fingerprints in his cake or no.  

Also-yesterday marked two whole weeks seizure free. That's only...I think 7 seizure days in the last three months. Amazing, considering where we have come from. That's less seizures in three months than he used to have in ONE DAY! Now, there's something to be thankful for.

OK, deep breath, focus on the positive, and go be cheerful so Dave can enjoy his day. Right. I'll get right on that.

Teena

two really GOOD things happened today. One-Ben's Ketones were up at 100 this evening. Ketones read where ever your body was 12 hours ago, so it's possible we will see another dip in the morning but we are happy to them not only come up, but higher than before.

The other thing was how engaged Ben ws in today being David's birhtdya. He sat with us the whole time Dave was opening presents, which took some time as he likes to guess before he opens a package. Ben also helped David open gifts....something Ben really didn't "get" before this year. We are also noticing he wants to sit at the table during meals when the rest of us are still there. This is most definitely a first.Actaully, he sat and "played" the princess game wiht Meg and I for nearly an hour-a record tiem for Ben to sit in one place.(you who know him will recognize this for the miracle it is. In fact, last week at Dr. Mark's office, Ben sat in a chair and drank his cup and looked at a book. When he got up Dr. Mark said "wow! I have never actually seen Ben sit before!")

So aside from my freak out from earlier, this has been an amazing day. God has been so good to us, we feel so very blessed. I recognize that I am not so great at praising Him in the bad times, but I am so, so thankful for the blessings.

Ben's induction into Keto was pretty painless. I still experienced a lot of stress, but this was as smooth of a transition as I could have possibly hoped for.  Ben was, and still is, pretty sleepy. Other than one drop in blood sugar, which was expected, sleepiness has been the only side effect.  I have a few fun stories to share with you here.

1. On day two, the neurology team came to discuss Ben's case and the possibility of discharge. As we stood in the hallway chatting, Ben took his car and drove in, out, and under everyone's legs. Then he wandered over to the art table, stood on it, and treated all of us to a song(I think it was "it's beginning to look a lot like Christmas"). At this point, the neurology team decided Ben was well enough to go home.

2.The dietician told me she could hardly get from one end of the neurology floor to the other, because nurses and doctors kept popping out of doors and asking "How's Ben doing?"  Dave and I figure this is for two reasons-A. they care about Ben B. they are hoping we won't call as often any more. We figure, no matter why they are emotionally invested in Ben, we're just glad they are.

3. Ben was squeezed into whatever room was available in order to be inducted.  This ended up being the respiratory care quad. Every other child in there was on a ventilator of some sort. The nurses couldn't get enough of Ben-he played with them, flirted endlessly, taught some signs. He and I took endless numbers of walks across the whole floor. Ben would wave at all the kids in the rooms and smile. We also pushed wheelchairs and an oxygen tank up and down the hallway for hours. 

4. The other child in Ben's room was really, really sick. I'm not sure what the situation was, but on the last day, Ben poked his head around the curtain and said "Hey, you want to be friends?"

We are seeing more complex speech from Ben.  Whether this is from Keto or is just his natural development remains to be seen. Today, his loving sister was repeatedly hitting him on the head with a balloon and singing a song about "getting you".  Ben said "hey!" she didn't stop so he yelled louder "HEY! Don't get me!"  This is good stuff.

I did get a little crazy today. The dietician and epileptologist added numerous supplements to Ben's regualr roatation. His last round of tests indicated he is low in calcium, sodium, and folate. Poor Ben now has three round of meds he has to take each day, and I have to give each day.  Add to that, I didn't have any of these supplements, and had to purchase them.  Somewhere in there I had to cook and weigh each snack and meal. I also made breakfast for the next three days, and lunches. Tonight I hope to get some dinners going, and then all I have to prep tomorrow is snacks. This is a lot of work, but after I had been at it for a while, some of my old SCD practices kicked in and I started thinking in terms of cooking veggies in batches and freezing them  so I don't have to make every little thing from scratch when I assemble meals. I think it will get easier....

Teena 

Things are going well in the hospital for Teena and Ben. They had to give him meds fairly early this morning and that was the end of the sleeping for them last night, but otherwise, it was a pretty uneventful night. They have had Teena going like crazy again today, but it was nice because they had a couple of people keeping tabs on Ben while she was doing classes. When we talked this afternoon, they had Ben out again and it sounded like Teena was going to get a bit of a break. wonder of wonders.

There are a number of pretty big news points for today.

1.  The genetecist called and some of the test results came back and so far, they have all come back normal. This is generally good news because they are saying that he does not have a metabolic disorder. However, it is really surprising. In fact, even the nutritionist at the hospital today said that she would bet money that he had a metabolic disorder of some kind. We are still waiting on more test results, but at this point, this is looking like a dead end.

2. We had been expecting to start lowering his meds after starting on the Ketogenic diet. This seemed important to us particularly because doctors keep telling us that he should not be on Ativan for a long period of time. What we found out today though is that he needs to stay on the same meds for the first three months after starting Keto. At least this is one decision we don't have to keep considering over the next three months.

3. A number of Ben's levels were low for different things his body needs like calcium. So, he is starting a bunch of new supplements and we're going to have to be a bit creative to get them all in him over the course of the day.

There is much more to discuss, but that will need to wait until tomorrow.

David

All in all, everything went well today. We got up early to get everyone out the door. Teena and Ben both made it out about 7:30. There was a lot to do for them when they got there before they could check in. Teena hasn't been able to talk much because they have been running her ragged, but here's what I think I know.

Nate and Meg spent the day with Heather after they finished VBS and they had a very good time over there.

Ben has been doing very well there so far today and there are not 1, but 2 nurses assigned to Ben. They took a turn watching him so Teena could be in a meeting and apparently they came back sweaty and tired after trying to keep up with him...aah our little boy. Wayne and Jan stopped by for a while to keep an eye on him so Teena could get some food. After working with Teena for a bit, Elaine Cumbey seems very confident and optimistic that we will be able to do this, which is very encouraging.

The one concern at the moment is his blood sugar level, which is low and has the nurses somewhat concerned. It will be interesting to see what they decide needs to be done about that tomorrow. 

At this point, no further thoughts on when they will be able to come home, but the hope is tomorrow evening. We'll see.